Office for Civil Rights

Winston A. Wilkinson
Director, Officer for Civil Rights
U.S. Department of Health and Human Services

JW Marriot Hotel
New Orleans, LA

Opening Remarks
Good afternoon and thank you Clyde for that kind introduction.

I am pleased to have this opportunity to address this national audience of public and private sector providers and professionals involved in front line planning and services in emergency situations at this important conference on Successful Emergency Preparedness, Response, and Continuity.

This is a key priority for Secretary Leavitt and it's fitting that this conference is taking place in New Orleans, where the Secretary is playing an active role in rebuilding the health care system.

Secretary Leavitt has made more than a dozen trips to New Orleans since Hurricane Katrina devastated this area and, in keeping with the theme of this conference, the Secretary's efforts are focused on looking forward, rather than backwards, to help with rebuilding a patient-centered health care system that provides a continuum of health care better than the one that existed prior to Katrina's devastation.

The state, local, and federal collaboration that is taking place in New Orleans to build an improved health care system is a good example of what can be accomplished through partnership, and that is what this conference is all about.

And so, I am particularly pleased that the session in which I am participating is with the Mayor and Police Chief of Slidel, whom I salute for their great service to the people of Slidel and Louisiana.

Devastating and tragic events, such as Hurricane Katrina, serve as a catalyst for change.

And Katrina, as well as other catastrophic events that we unfortunately have witnessed during the past few years, have certainly focused the attention of the federal government, including the Department of Health and Human Services, on ensuring that the nation is prepared for the next emergency.

This is a collective effort on the part of all Federal agencies.

HHS & OCR Role
With its charge to protect the health of all Americans and to provide essential human services - especially for those least able to help themselves -- HHS, and the various agencies within our Department, are an important part of this collective effort, including the Office for Civil Rights, which I head.

You may not immediately think of the Office for Civil Rights as a partner in emergency preparedness and response activities, and so I am here today to raise awareness about the important issues in which we are involved and urge you to consider these issues in your planning, response, and continuity efforts.

These issues fall into two categories:

• The first is consideration of the HIPAA Privacy Rule in collecting and using health information for emergency preparedness and response activities.
• For those of you who may not be familiar with the HIPAA Privacy Rule, HIPAA stands for the Health Insurance Portability and Accountability Act. The Privacy Rule, which stems from HIPAA, establishes Federal protections for the use and disclosure of individually identifiable health information.
• My office is responsible for implementing and enforcing the HIPAA Privacy Rule, and we have developed specific guidance about how the Rule applies during emergency preparedness and response.
• The second area in which we are involved and which I will be highlighting in my remarks today is sensitivity about, and responsiveness to, the issues raised by special needs populations - especially persons with disabilities and individuals who do not speak English.
• These are particularly vulnerable populations in emergency situations and federal laws, such as the Americans with Disabilities Act and Title VI of the Civil Rights Act, require emergency planners and responders to ensure that their special needs are taken into consideration.

And so, what I'd like to do this afternoon is to give you the national context and imperative that frame these issues, and also talk about some of my office's specific activities in these areas.

I will conclude my comments by touching upon the Department's newest area of responsibility - helping to coordinate Federal human service delivery in emergency response.

National Context
When the Department of Homeland Security issued its comprehensive nationwide review of state and local emergency plans this past summer, it concluded that two key areas which still need attention are:

• misinformation and confusion about the HIPAA Privacy Rule and its impact on gathering and sharing health information; and
• the failure to adequately address special needs populations.

The Department of Homeland Security concluded that while state and local emergency planners must take primary responsibility for emergency preparedness planning, the federal government also has an important role to play in providing technical assistance and tools for state and local partners in their preparedness efforts.

I am pleased to tell you that our office has done just that.

With a Headquarters office of national policy staff that is part of the Office of the Secretary and 12 regional offices throughout the country, we are well positioned to provide technical assistance and resources at Federal, regional, and local levels.

If you visit our website, you will see that we have developed a link that contains emergency preparedness planning and response resources and technical assistance on the HIPAA Privacy Rule and special needs populations.

I urge you to visit this website, which you can access through the main HHS website by clicking on Office for Civil Rights, to view some of the resources we have made available.

HIPAA Activities
One of the most significant and successful things that we have also done is to develop an interactive web-based tool for emergency preparedness and recovery planners to guide them through a series of questions to determine if there are HIPAA Privacy Rule considerations that they need to address in collecting and disseminating health information and, if so, how to address them.

Commander Debra Tubbs, from our Office for Civil Rights' Regional Office in Dallas, is here at the conference and will be discussing this tool on Wednesday, so I hope you can join her in that session to learn more about it.

We unveiled the tool at a joint HHS/Homeland Security conference in Washington, D.C. in June of this year, which brought together emergency preparedness planners from across the nation to focus on issues involving persons with disabilities and the elderly.

In announcing the tool, Secretary Leavitt commended the tool as "strengthening America's ability to better prepare for emergencies, such as manmade and natural disasters."

He also recognized that "being able to coordinate health information appropriately and in advance will help save lives."

Since we posted this HIPAA Privacy Rule decision tool on our website, we have had more than 25,000 visits to the tool, which underscores its utility and significance as an effective planning tool.

While the initial purpose of this decision tool was to help in the collection of information about persons with disabilities and the elderly, it is applicable to most emergency planning efforts. The intended audiences include health care providers and health plans, as well as emergency preparedness and recovery planners at the local, state and federal levels.

We also have provided technical assistance on the HIPAA Privacy Rule to emergency responders and, within days of Katrina, posted bulletins on our website on the use and disclosure of health information to assist with disaster relief efforts.

Special Needs Populations

Disabilities
As I mentioned, the impetus behind our developing the HIPAA Privacy Rule decision tool was to help emergency preparedness planners collect needed information about persons with disabilities for their preparedness plans.

This impetus stemmed from the President's Executive Order issued on the 14^th Anniversary of the Americans with Disabilities Act in July 2004, which established responsiveness to persons with disabilities in all aspects of emergency preparedness, response, and recovery as a national priority.

This Executive Order created an Interagency Coordinating Council, on which HHS sits, to strengthen Federal emergency preparedness efforts to ensure the safety and security of persons with disabilities.

A key responsibility of this Council is to facilitate cooperation among Federal, state, local, and tribal governments and private organizations and individuals in the implementation of emergency preparedness plans as they relate to individuals with disabilities.

To emphasize this cooperation, the Secretary of Homeland Security wrote a letter to each Governor last year asking them to take the following actions:

• First, to ensure that the state's emergency preparedness plans are as comprehensive as possible with regard to the issues facing individuals with disabilities;
• Second, to encourage persons with disabilities to actively take part in the planning process and to help them and their families take initiatives to prepare themselves for emergencies;
• Third, to ensure that emergency management personnel are properly trained with regard to the special needs of persons with disabilities;
• Fourth, to make emergency information and resources accessible to persons with disabilities; and
• Fifth, to use Federal homeland security dollars on initiatives that respond to the needs of individuals for emergency preparedness, response, and recovery.

More recently, in a continuing effort to focus on this critical area, President Bush signed the Department of Homeland Security Fiscal Year 07 Appropriation Act in October of this year, which had a number of Disability specific requirements, including the creation of a disability Coordinator in FEMA.

LEP/Immigrant Populations
As the Federal government has continued to strengthen its efforts to respond to persons with disabilities in emergency preparedness and response, it has also focused on other critical populations in need of particular attention, such as immigrants and persons who do not speak English or do not speak it fluently.

For example, the Assistant Attorney General for Civil Rights at the Department of Justice issued a directive to all federal agencies following Hurricane Katrina to consider civil rights issues in all aspects of their emergency preparedness and response activities.

To ensure that race, color, and national origin do not impede access to information, shelters, and other evacuation and relief services, the Department of Justice convened a workgroup, in which my office participated, to develop proactive steps to ensure non-discrimination, such as:

• conducting outreach to community and faith-based organizations serving minority populations to include them in emergency preparedness and reconstruction planning; and
• ensuring that agencies have in place language services so that non-English speaking persons are able to communicate their needs, apply for assistance, and receive important information. For example, my office contracts with a service that can instantaneously connect us by phone to interpreters that speak more than 180 languages and dialects.

To help carry out these civil rights non-discrimination mandates on the national level, we are working with our HHS Office of Public Health Emergency Preparedness, our Office on Disability, and the American Red Cross to develop triage questions to help identify special needs of persons with disabilities and individuals who do not speak English to improve their health, safety and comfort in shelters, including medical shelters and special needs shelters.

On the local level, our ten regional offices are working with their regional HHS partners and states to provide technical assistance and resources to plan for and respond to the needs of individuals with disabilities and non-English speaking persons in the event of an emergency.

Human Services
We also are working on a national and regional level to help carry out a new responsibility of HHS, which is to help coordinate Federal human services in the planning, response, and recovery phases of large-scale emergencies.

When we think of emergency preparedness and response, the first thing we think of is attention to immediate medical and health care needs.

But an emergency the scale and scope of Katrina demonstrated that we also have to plan for and be able to respond to the array of human services needs that may also accompany a disaster.

HHS's new responsibility in this area stemmed from the February 2006 White House report on the Federal Response to Hurricane Katrina:Lessons Learned, which clarified HHS's national role in coordinating emergency human services.

To respond to this recommendation this past Spring, Secretary Leavitt put together a workgroup, in which my office participated, to strategize how to improve the delivery of human services during a disaster response and establish a mechanism for coordination between Federal agencies for delivery of these services.

Secretary Leavitt also appointed a Human Services Policy Coordinator within the HHS Office of Public Health Emergency Preparedness and designated our Administration on Children and Families' regional offices to work with state and Federal partners to facilitate and support emergency preparedness, and response efforts.

My office participated in the HHS effort to collect information by surveying HHS and other federal agencies and by holding public hearings with state and local officials and constituent groups, including those representing minority and vulnerable populations, to identify areas in greatest need of attention following Katrina.

We found that in addition to health and medical issues, major needs centered around case management, family re-unification, cash assistance, child care, and mental health.

These are all areas that are critical to emergency preparedness and response efforts and I urge you to consider them as well.

Conclusion
I have covered a range of issues this afternoon - from the HIPAA Privacy Rule, and persons with disabilities and those who have language barriers - to human services needs that transcend all populations.

Some of these issues may be new to you, but hopefully they are issues which you will consider carefully and include in your planning and response efforts.

In addition to Commander Tubbs who will be here for the remainder of the conference, George Bennett, our Deputy Regional Manger for HHS Region VI Office in Dallas, is with us here today and I urge you to consult with any of us for further information during the conference.

As I mentioned at the outset, collaboration is key, and we stand ready to assist in your important efforts in the critical area of emergency preparedness, response, and continuity. I commend each of your for participating in this important conference and wish you good luck in your important work.

Thank you.

Last revised: April 12, 2007

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